Akira was diagnosed as having cystic hygroma, a malformation in her lymphatic system, in utero at her 20 week scan. The prognosis for her surviving to birth was not good as the malformation, which is like a giant accumulation of lymph fluid in various cysts, affected her airway so badly. Her life was saved when she was born through exit procedure, similar to a c-section, but where baby is intubated before being removed from the womb. During this Akira's mother lost 6.5 pints of blood so it was a dangerous procedure, but it was successful and Akira could be born with her airway secured and immediately put on a ventilator.
She spent her first 5 months in hospital and had a tracheostomy to secure her airway until she was old enough to have surgery to debulk the cystic hygroma. This was done when she was 18 months old. The surgery was very complex involving all the major nerves of the head and neck and the major blood vessels going between the heart and brain. The surgery lasted 10.5 hours, during which the nerve to her shoulder had to be cut and repaired in order to remove some of the cysts. It was a miracle that this was the only nerve cut when you think of all the major important nerves that were involved. She lost her ability to swallow during the surgery and to this day we haven't figured out why, but after 2 years of being tube fed she has mostly recovered it. She still can't eat all foods but she can eat most. She couldn't lift her arm above shoulder height but after years of physical therapy she has regained much more movement than expected.
She has Freys syndrome from the surgery which is a rare nerve condition where the nerves on her face near the surgery have confused themselves into thinking they are salivary glands, so every time she eats her cheek goes red and sweats.
Akira has been in and out of hospital her whole life, clocking up 11 general anaesthetics and 4 surgeries in her 6 years of life. She had a tracheostomy, a major debulking surgery of her cystic hygroma,removal of her tonsils and adenoids to make more room in her airway before removing the tracheostomy then a closure of her tracheostomy stoma. She was tube fed for 2 years and needed intensive 24 hour care up until she was 5 but is now 6 and doing really well.
She will more than likely need more surgery as the years go on. Her condition is incurable but we are extremely blessed to have got to a point where she is as healthy as she is. We could never thank her surgeon enough. Akira finds going into hospital quite hard now that she is older, she will love having this lovely quilt to take with her as one of the things she doesn't like is the hospital blankets. Coming from Shetland and travelling all the way to Glasgow to see her medical team means we have to bring any home comforts with us. Big thanks from Akira.